More Testing

1 Nov

While we are making progress on her weight issues, we have some new issues to deal with.  Our daughter’s last two labs have shown her HIV levels are low/undetectable and her CD4 count is great.  However, the last two times other things they test have come back abnormally high or low.  Our PID doctor is now recommending more testing and is sending us onto a different specialist to see what is going on in her little body.  We are a little nervous about some our new unknowns, but we are continuing to look to God for our peace and strength for each day.

I cried when I found out about the need for more testing.  I personally hate that our daughter will have to endure more testing.  She has been through so much in 9 months.  I really hate there is more.   I think the biggest stresser about HIV is probably the stigma, but the number two thing for us has been watching our daughter undergo all these tests and lab work at her young age.  

When they drew blood last time, it took 45 minutes for them to get enough blood.  Our daughter fights and screams the whole time.  It usually takes 3 to 4 people to hold her down.   For some reason her veins are hard to get into and then they can’t get enough blood.  There is a RN at our PID office that is always in tears by the end of it all.  She is so little and so pitiful that it breaks everyone’s heart.   Last time they drew blood out of 3 places and the time before last it took 4 places.  I always end up crying just wishing they could do all the poking to me.  How I wish I could face the pain instead of her.  How I wish she could understand that this is all absolutely necessary and for her good.

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5 Responses to “More Testing”

  1. one thankfulmom November 1, 2010 at 11:41 pm #

    Hi Kay,

    I’m so sorry to hear about the need for more testing. By any chance do you they have pressurized lidocaine available for numbing at your clinic? They use it at Seattle Children’s and it is amazing. The lidocaine shoots through the skin painlessly and immediately numbs the skin. My girls love it and it has significantly reduced their anxiety. I hope you get answers quickly and with as little pain as possible.

    Lisa

    • Kay November 2, 2010 at 2:12 pm #

      Lisa, Thank you for this suggestion. I have never heard of this, but I will ask about it on our next visit. I would love to find anything that would help ease her pain and anxiety. Thank you so much.
      Kay

  2. sko3 November 4, 2010 at 11:05 am #

    S has a prescription for Emla, which is a topical numbing cream (with lidocaine in it). You put it on 30 minutes before the blood draw. It helps with the physical pain but the psychological stress is real. For the last two draws, they have called down the people from child life (her clinic is in a hospital) who are experts at helping kids calm down through invasive procedures. The combination of the two has been very helpful.

    For the Emla, I just asked for the prescription at our first visit. I had heard about it from other parents. They said it wasn’t something they would have thought of on their own but that it was a good idea. So she got it. The only thing hard about this for me is that I never know where they’re going to want to take blood so I numb her up in a couple of spots just in case.

    • Kay November 4, 2010 at 10:19 pm #

      Thank you so much for this advice. I am a little surprised my doctor’s office has not tried some of these things because they know how bad she is, but maybe it is just slipping their mind. I will put it on the list of things to ask about.
      Thanks!
      Kay

  3. sko3 November 5, 2010 at 8:46 pm #

    Call before the visit to get the prescription. It sounds like they don’t have the spray stuff there or they would have done it. Call a week ahead, pick up the prescription and give it a whirl! Sounds like it can’t hurt any!

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